Resuming my medication’s status quo ante…

My GP has prescribed Diltiazem and Phyllocontin in their pre-hospital doses. The hospital doc cut them, Diltiazem by half and then all, for no reason that I was given (in fact, deleting it from my list, done shortly prior to discharge, seemed to me to be no more than a whim), Phyllocontin by half as he said it had become toxic. This isn’t unusual, as Phyllocontin’s therapeutic dose and toxic dose are very, very, close.

Losing the Diltiazem makes it utterly impossible to stabilise my heart rate, which means much of the time I’m tachycardic.** This is not a good thing!

** Tachycardia is a heart rate in excess of 100bpm. My rate is a fairly uniform 95bpm – that’s still tachy in my book, let’s not nit-pick over 5bpm, it’s still bad news in the long-term.

Halving the Phyllocontin simply makes it very much harder to breathe. This, too, is not a good thing. For COPD, Phyllocontin is my baseline drug – the foundation on which the rest of my regime is built. Having half the foundation missing really screws things up.

So, already started tonight, both drugs have been reintroduced at their former level. The difference is perceptible even after one dose.

I shall, of course, monitor myself closely – obsessively, even – for a return of the conditions that almost killed me. If, as I suspect, that doesn’t happen, then things will continue as before.

If I crash – and I can think of no reason why I should given how many trouble-free years I’ve already taken these two drugs for – I’ll reduce them again.

It really is that simple. However, as reducing them in APH brought about zero perceptible benefits, I’m not anticipating problems.

My recovery peaked during my third week in APH, after which I began an inexorable downward slide – something with which the consultant’s HO, in our pre-discharge conversation, concurred. So why was nothing done about this? I have no idea. And why did the recovery not resume until I was out of APH?

Now things are back under my control, I fully expect to improve, NOT deteriorate. I’ll let you know how it pans out.

15 thoughts on “Resuming my medication’s status quo ante…

  1. Prescribed 250mg phyllocontin for first time last week. Not taken it yet, frightened! Not sure what it does, ( just scared)

    • Actually 225mg – one tablet. It’s a bronchodilator, which means it should improve your breathing.

      I’ve been taking it since a couple of weeks after its release (1980 or 81), and I’ve never had the slightest problem. While its active ingredient, Aminophylline, is derived from the notorious Theophylline, it shares none of the latter’s problems (like puking uncontrollably).

      All in all a great drug and, at that level, absolutely no risk of toxicity.

      It’s essential though, once you’re stable, that you remain on the brand on which you were stabilised (doctors and pharmacists are aware of this, it’s well documented, so shouldn’t be a problem).

  2. Thank you for helping. This is a shit way to live! Read ur posts every day. When r u makin faggots, haha, waiting for the recipe! Love cooking too x

    • Good point – forgotten about the faggots. They’re a lot of work so they’ll have to wait til I’m stronger. Hopefully not too long.

      One thing I forgot to mention (whatever your respiratory problems), it’s vital to establish a timetable for your meds and stick to it, and not just take them at random when you remember. I have 19 drugs – all taken at exactly the same time every day (if you have a smartphone, set alarms so you don’t forget – put in the drug name too), and by doing that I function reasonably well. Probably why I’m still alive too – 17 years with COPD.

      Recently in hospital for six weeks, where they seem never to have heard of timetables, I rapidly deteriorated! Getting back to normal now though, slowly.

    • You sound like you need more meds if you’re going down that fast. Check out my list – that kept me stable, and still does, mostly.

      Ask your GP for a referral to the nearest Pulmonary Function Laboratory – most major hospitals have one – they’ll give you a damn good going-over (mine took 2 days), and optimise your meds too. A referral to the nearest chest clinic is no bad thing either – keeps you in touch with new developments in meds if nothing else.

      And if you are deteriorating at all, rapidly or slowly, one Phyllocontin tab won’t get the job done. Do you have anything else?

      Don’t know if you smoke, but if you do, stop right now – if you don’t it WILL kill you. Nothing is more certain, and it’s not a good way to go. (You don’t need to smoke to develop COPD – I never have – but it’s by far the commonest cause.)

      COPD responds well to the right meds, but some GPs can be remarkably tight-fisted, especially these days (most people with COPD I’ve talked to over the 6 years I’ve been doing this have been grossly under-medicated), so do your best to get those referrals. COPD can be a death sentence, but handled properly, it needn’t be.

      Try to stay as active as you can, too. You probably won’t enjoy it, but try to go for a daily walk. Start small, even if it’s just round the block, and build up slowly. You’ll be surprised at how much ground you can cover by the end of a year, or even six months if it goes well.

      I buy my own antibiotics too, and treat my COPD according to the GOLD guidelines. Been doing that for 8-9 years and NICE are only just getting around to GOLD. The basic idea is that a flare-up needs immediate and aggressive antibiotic treatment – it works too. Trouble is, by the time it’s bad enough to be detected by a GP, it’s got a good hold, so learn to monitor your sputum for colour, taste and smell (excessively salty, or just generally offensive, and yellow or green, hit the antibiotics). I can knock a flare-up back down again in 2-4 days – less time than it takes to get an appointment – and the faster that happens the less damage it does. And I buy Amoxyl from these guys Based on Vanuatu, in the Pacific, the Amoxyl is sourced from the New Zealand market. Good drugs – good people too. Delivery time is about a week.

      OK, time for bed. If anything occurs to you, well, you know where I am.

      • Sorry Ron for not replying sooner. Internet problems. Feel like I’m goin mad because I just wrote all of this out once and lost it,(not good with computers). Thank you so much for your advice. It is such a relief to speak with someone who actually understands.
        I am a 46 year old Mother of 2 teenagers. Yes, I smoked, (regrettably), but gave up immediately after diagnosis. I am currently taking “Ventolin”, “Symbicort”, (400) and “Spiriva”. (To be replaced with “Genoair”, apparently).
        I have been in a relationship with the Father of my Children for 25 years! Things are NOT going well! Is part of that “Spoonie”theory where people don’t think there is anything wrong with you because they can’t see it?
        Anyway, I have managed to find your “Twitter” thing, (haha, really not good at this), I am not a follower, yet, as unsure what to do!
        Feel awful writing to you about myself when you are obviously not 100%, but I had to reply to your answer, if that makes sense!
        Thank you so much, hope u are OK xx

  3. Hi Ron, just read your thread of most copd patients being under medicated, I’m stage 4 although don’t have oxygen as yet, I’m on Sabutamol inhaler, Tiotropium bromide 18mg, Seretide 500 salbutamol 5mg nebuliser liquid Sodium chloride nebuliser liquid the last two are taken in my nebuliser up to 4 times a day,carbocisteine 375mg. Is there anything else you think my doc should be giving me? I also have high blood pressure and high cholestrol I take Lipitor 20mg bendroflumethiazide 2.5mg and lisiniprol 20mg for these. Hope you’re feeling a bit better .

    • Hi Caroline,

      First thing is that nebulising Normal Saline solution, unless your sputum is particularly hard to shift, has little or no therapeutic value. If it is hard to shift, then yes, it can be a useful adjunct. If you ever run out of Normal Saline, cooled, boiled water is just as effective.

      I’m stage 4 too and, perversely, my O2 sats rarely drop below 95-96%, which means no supplemenary O2, even though, in hospital recently, it was shown to be beneficial, especially at night.

      The problem with O2 and COPD is that the therapeutic level is so low – 1% – that many doctors feel it’s a waste of time anyway, and don’t bother with it, which is, I think, a mistake. Go to the more usual 2%,though. and it can shut down the inhale reflex, especially if you’re asleep, causing potentially dangerous apnoea.

      This is my meds list

      You probably spotted this, but it’s vital to set up a medication timetable – and stick to it. The body responds far better than if you take them more or less at random, when you remember (more people than you’d think do that).

      I’ve just (last night), revised my own meds upward, reversing the cuts made recently in hospital – I feel a hell of a lot better for it, too.

      As for your heart meds, given how difficult it proved to stabilise myself, I wouldn’t presume to intrude on that area, except to say that there’s not enough money in the world to make me take statins. They’re dangerous (all that cholesterol has to go somewhere!).

      I found a basically veggie diet, high in oats and soya,brought my own high cholesterol down pretty quickly, and it stayed down. Even now, years later, it’s just about nuisance value – not high enough to bother my cardiologist – whereas before it was pushing me towards CHD.


  4. Thanks Ron my sats are good doc says it’s because of my age, although I do waken some mornings as if I’m being suffocated and I have to get up I get very distressed with this.Anyway keep blogging and take care.

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